October is Down Syndrome Awareness Month, but on any given day (and more than a few wee hours of the night) of every single month of the year, Heather Haskin is working hard to raise awareness of the remarkable and important contributions that people with Down syndrome make in their communities. She also puts her incredible energy and enthusiasm to work for local parents, helping them give their children every possible advantage.

Heather lives in Roseville with her husband and two little boys, where, on top of all her full-time mom duties, she runs the National Down Syndrome Coalition. She was inspired to found the NDSC in 2005, after the birth of her youngest son, Malachi, who has Down syndrome, and she was recently recognized by Exceptional Parent Magazine for her contributions through NDSC.

As a new mother, Heather was horrified to discover the ignorance and callousness that still persist in the medical community and society in general when it comes to Down syndrome. Heather recalls, “When they told me [my son] had Down syndrome, someone actually told me, ‘You don’t have to take him home if you don’t want to.’”

Heather, who holds a BA in Child Development from CSUS and had over twelve years of experience working in Special Needs before becoming a mom, describes the information she received that day as “outdated” and “not balanced.” Where was the information about nutrition therapy or the importance of building self-esteem in children with Down syndrome? Where was the news about recent advances in educational and therapeutic techniques, or the studies being done on cognitive enhancements? What about these kids’ “huge memorization capacity,” as Heather describes it, or their aptitude for visual learning? Furthermore, where was the encouragement, the hope, the support for parents? Where were the inspiring stories of individuals with Down syndrome who have shattered stereotypes and defied statistical averages by living lives that are way above average —largely thanks to their parents’ belief in them?

Today, Heather is full of these stories, and eager to share them not only with parents and doctors and educators, but with every member of every community. New parents just receiving the diagnosis of Down syndrome are likely to hear depressing news from doctors and specialist, who still tend to drone at them with statistical averages about health complications, the severity of their child’s disability and study averages they imply indicate what parents should expect from their children. Heather knows better. She is strong in her conviction—based on her own experience—that what parents really need to hear are the stories of those individuals with Down syndrome who are achieving above the averages, along with information about how their families helped them get there. Here are just a few of those stories, which Heather shared with me across her kitchen table one August afternoon while her little boy, Malachi, kept reaching for a small pile of paper stars that were almost the same shade of blue as his big, bright eyes.

Individuals with Down Syndrome: Educated, Athletic, Independent, Successful...

Down syndrome is notorious for causing poor muscle tone, but, as Heather is quick to point out, there are exceptions. Karen Gaffney, for example, is a woman with Down syndrome who successfully swam the English Channel as part of a relay team of top athletes. Gaffney is also a college graduate, a teacher’s aide and a professional speaker who travels the country to champion full inclusion for people with disabilities. With help from her parents, she founded the Karen Gaffney Foundation, a non-profit dedicated to raising expectations and improving the public’s attitude toward individuals with disabilities. Learn more at www.karengaffneyfoundation.com. Heather can also tell you about a pro body builder with Down syndrome who competes right alongside non-disabled contestants, or the gymnastic team Breaking Barriers, which boasts athletes and performers with Down syndrome among its impressive team members.

People with Down syndrome are also frequently classified as poor auditory learners, but that is not the case with Sujeet Desai, a music academy graduate in Massachusetts, who plays six instruments and regularly performs solo at concerts and public events. In addition to pursuing his music, this young man with Down syndrome also happens to be happily married to a lovely young woman with Down syndrome who is also highly educated. You can meet Suj, his family, and learn more about his life at www.sujeet.com.

Heather also told me about a proud local mom she spoke with recently who reported that her nineteen-year-old with Down syndrome is looking forward to starting a 2-year program at UC Berkeley this fall. He has a full driver’s license too, and according to his mom, he’s a much better driver than his brother (who does not have Down syndrome).

These were the stories Heather needed to hear, the family albums, so to speak, that she needed to look through, when her son, Malachi, was born. They are the hope she now shares with new parents and other families touched by Down syndrome, and the truth she hopes to share with everyone in the Sacramento area and beyond. “It’s no longer acceptable to think of them as less,” says Heather. “These children were made for greatness,” she says. “With any child, if you set them up for failure, then they’ll fail, and if you set them up for success, they’ll succeed.”

To find out more about Heather Haskin and the National Down Syndrome Coalition, read this month’s feature story entitled, “Mom on a Mission.” Or check out the following websites:

www.NDSCoalition.org
The National Down Syndrome Coalition provides resources, support and smiles to families in the greater Sacramento area touched by Down syndrome. 532-4773

www.BuddyWalk.org
The Buddy Walk helps raise awareness and promote inclusion for individuals with Down syndrome. It also provides support to local families. Whether you walk as an individual or form a team, you’ll have fun and feel inspired at this community event. Volunteers are still welcome.

NDSC’s 3rd Annual Buddy Walk Takes Place October 6 at Regional Park in Auburn. The Down Syndrome Information Alliance hosts another Buddy Walk on October 13 at Hagan Community Park in Rancho Cordova. For details, check those dates on our Calendar page here at SacramentoParent.com.